VCG & Rivers of Recovery Journey to Well Being

Greetings!


Rivers of Recovery and VeteranCaregiver have joined forces to bring this proven and remarkable recreational therapy program to 12 veterans and their caregivers.  Yesterday marked the beginning of the first 4-day program with a pickup of half the group at the Salt Lake City airport, where it was wonderful to meet folks we only knew through interaction here at VCG.  Matching faces with names was a pleasure!


We then embarked on a 3.5 hour drive northeast of Salt Lake City, driving through beautiful country, complete with snow-capped peaks, rolling hills, verdant valleys (I always wanted to write the word "verdant" in a sentence!), and arrived in the small but remarkable town of Dutch John, Utah, population 80.  We settled in for a great dinner and lots of fellowship, with the preface by Dan Cook, the founder of Rivers of Recovery that we would be on the Green River tomorrow, absorbing and appreciating with all our senses the beauty and fun of this gorgeous location by 8am.  Included in the morning and evening would also be specific relaxation tools, sessions one on one with a remarkable recreational therapy staff, and in conjunction with medical leadership at the highest levels.

For most, this was a challenging day just getting on a plane and embarking on this journey.  Yet, we know that neither veterans nor our remarkable caregivers lack for courage.  Stepping into new situations, trusting those they don't know in a new situation, and opening up to new experience is a valiant step.  For those of you picturing warm temps and calm blue water -- well, it's very chilly a mile up, and the clothing is layered for the high of 52 and a low of 39.


It's going to be a good day!  Pictures to come --


Linda

Memorial Day Thoughts

Greetings,

As we welcome Memorial Day today, and after the final parade or television special has faded, I’m hoping that we can take time more frequently as a group to consider those who paid the final and absolute sacrifice.  They will always have our respect and our compassion because they hold precious memories, while our group goes on.

Did you watch, participate, or read of Memorial Day events this weekend?  I was struck once again at the genuine attempts to illustrate to Americans what our brave troops experience, with footage of reasonably graphic field operating rooms, the challenges met when in the recovery and rehabilitation phases, and in trying to explain what living with TBI and PTSD can mean to a family. There has been some progress made in exposing the general public to what military families experience, especially in the case of the wounded, ill, or injured.

Yet. 

Yet, there were many references to America’s families throughout these local and national programs and newspapers, but often the camera or photo was of the veteran and a child, and very, very rarely, the veteran and their family or caregiver.  Below are vets and caregivers at WRAMC; surely we all recognize that a picture is worth a thousand words? 

Until the Caregiver is understood as the heartbeat of the family, and often the most critical link in the continuum of care, we still have much work to do. As long as the government feels that the intention to provide the programs they feel are helpful is enough, we have more work to do.  And, if the belief is that full-blown programs are already available and effective when they are not fulfilling many of the family needs, we have more work to do.  Finally, if programs are rolled out months and even years after the time they were needed, many more families will move far too slowly to successful outcomes.  Or not…

On this Memorial Day, we hope that the Gold Star Families are feeling supported, loved, and affirmed.  Our hearts go out to you.  It is our fervent hope that bureaucracy will give way to the needs and the dreams of the Blue Star Families.  Since wars are not going to end, as a group, we need to focus on logical, field-proven, integrated two-way communication, and peer-mentored programs to guide our newer Wounded Warriors through the every-evolving care system.  We need to firmly acknowledge the role of the family Caregiver as vital to America’s interests.  Caregivers and veterans, on this Memorial Day, please know how honored we at VCG are to be supporting YOU.

Linda

Wishing you a Happy Day

I had been thinking of writing another Blog on here but was looking for something cheerful and uplifting. I think we have all had to deal with a long hard winter, struggling with different aspects of the VA, fighting each day for our loved-ones and also, for many of us, the extra stress of flooding, tornadoes and other severe weather related problems.

This morning when I woke, the sun was shining and the sky was a clear blue. I took my dogs and my camera and went for a long walk. I am lucky enough to live in a rural area so in a few minutes I can be surrounded by trees, flowers and water. I know just how soothing and healing this can be. As I know many of you may not be able to get out and enjoy nature like this, I wanted to share my bit of bliss with you.

Not far from my house is a large area that was originally destined to be a building site for a number of new houses. When the housing market slumped, the area was abandoned and nature has taken back her own. I love to ramble over this area, especially to the lake, as a number of birds have made their home there. This morning, I saw to my delight, that a Canada Goose had nested on a tiny island on the lake and appears to be sitting on eggs. She certainly chose a safe place.

If you would like to see my photos, I have loaded them via Flickr, and you can see them here.

My small bit of good news is that the Caregiver Coordinator at our local VA appears to be taking her new job seriously. She has called me several times, just to check up on me, which I find to be comforting. She also talks with my care receiver, which is even better.

I do feel that we caregivers are making progress, even though it is not always apparent. It is a lot of work to keep educating people about who we are and what we do. On the days when I get discouraged, I look back and think of the advances we have made just in the last year. I know we cannot rest on our laurels. We have to keep up the pressure (yes, it is tiring) but small victories are certainly worth sharing.

I wish everyone a peaceful weekend, and if you have the chance, get outside and enjoy a little of what Mother nature has to offer.

The Life You Save May Be Your Own

Greetings, friends,

       It has been such a tumultuous two weeks at VCG, which is no surprise given a full moon and a long holiday weekend/week of family, group gatherings and meal, and travels.  Amid the generally accepted positive that holidays may bring, also comes the specter of additional stress and self-analysis.  It has been an especially busy and breakthrough time for caregivers and vets.

      What you don't see online at VeteranCaregiver are the behind-the-scenes direct Caregiving with advocacy, education, and coordination to navigate the system.  These are the innumerable phone calls, the text messages, the emails, and the discussions with many in order to provide solace, support, resource coordination, or actions for veterans and caregivers alike.  The caring is very close to 24/7, and the needs growing. And, as a small sampling of what occurs in the background of VCG, the end of this week was marked by several positive outcomes for two veterans with NO caregivers; those who need to advocate for themselves.  This is a measurable group; can you imagine the load this group carries – often alone?

      The first is a Reserve soldier with a serious TBI who had not received attention for his TBI for four months due to the prioritization of more acute physical injuries. His concerns were great since he could no longer read or write and his intellect and strong vocabulary were working against him in the system.  With half a dozen phone calls, and inquiries, this vet who'd "fallen between the cracks" was now aided by the organizations he didn't know of or how to ask for help.  He needed an advocate, and an existing caregiver called to ask for help on his behalf.  It was readily provided.  Remember, just because organizations exist to help, doesn't mean that there is proactive outreach to do so.  Personal contact and Advocacy made the difference. 

     With permission, below is a personal blog by a soldier who uses the VCG site as her Caregiver, and her site Friends as her safety net.  She is courageous, extremely private, and extraordinarily generous with her thoughts on the need for dynamic support from people who care.  In her own words, here is an excerpt of her thoughts on the challenges each day and the daily choices to fight to live:

       some of the injuries veterans face today are different than wars past.  traumatic brain injury is complicated, may have nary a symptom one day and the next day the same person can not function safely alone.  PTSD is being revisited to this country in a way that hasn't been felt since Vietnam.  loss of limbs and motor function is seen daily from soldiers coming home.  somehow we imagine in the civilian world that 'they' are being looked after.  

       surely we learned something from the 60's.  surely our soldiers now have it different.  yes, there has been some change but the truth is there is yet another population that nobody imagines to think of because the rationalization is that the government is looking after vets and their care.  i can assure you from personal experience that simply is not the case. even that world is give and take, appointments and paperwork, communication and organization.  if you don't possess the faculties or a home address to receive and review, the decisions will be made without examinations to determine the current health of the veteran and  the paperwork simply stops right alongside the 'care'.  

        they assume the last address on file is where you may be reached and if they don't get you there, they don't look. there is a reservoir of patience necessary to deal with this worn out and worn down, overloaded system.  the people who take care with vets and soldiers have to constantly be on guard to file all the right paperwork, keep track of medicines, appointments, reviews, emergencies, and review records to be sure everything gets from point A to B and on down the line to the many places that may be needed for care.  computerizing these systems have actually made it more difficult in my opinion rather than less.  if you don't know WHO to talk to it's a rough road. 

     our world is intricately connected by what we do and what we choose not to do.  every person matters.  caring matters.  love matters.  holding hands matters.  doing something today matters.  if it were you all alone, crying in the night, holding onto the old photo of what used to be, knowing it will never be the same again, what would you do?  how long do you think right now reading this that you could hold up in that pressure no matter your love for the person being cared for?  the difference any of us make is up to us.   the life you save may someday be your own.

"Those who can not remember the past are condemned to repeat it."  George Santayana

~aho mitakuye oyasin~

we are all one

     This week, please consider those seen and unseen on VeteranCaregiver and in the various medical centers and communities who do not know where to go for help, or don't have an advocate to assist them.  We ALL matter in the continuum of care.  Please proactively reach out; extraordinary lives depend upon it!

     Wishing only good ahead for each of you,

Linda

How Many Masks Do YOU Wear?

We are not having a good week.  On Easter Sunday, I was paralyzed from the sermon which spoke of rolling the stone away… and I just broke down and left to hide in the bathroom because even if the stone is rolled away from my “cave”, I’m still imprisoned.  The mask I wore Sunday was one of Despair:  no matter what I do, no matter what I choose, I disappoint someone.  My other two masks that day were Wife and Mom.

On Monday, because we just cannot get calls back from the VA after many voicemails and help from this site, now I was the full-on target of my husband’s frustration, anger, paranoia, and irrational behavior because he was “going to make things happen today!” It was 7:30am the Monday after the holiday.  I asked if we could discuss this after I took the children to school, and was told that the “children need to know how life really is”!  Oh really, do they?  NO, they do NOT!  My mask to the children was the It’s-All-Right one, and to my husband, the Don’t-Make-Me-Choose one.  In choices like these, someone will be hurt.

And, now today (Tuesday), he wants the contact numbers for anyone I’ve ever called about his case because clearly I cannot do my caregiving to his exacting standards.  I wrote them all down for him, because this is the very common distrustfulness of PTSD and I have called many people for him.  Of course, I then had to alert several people that they might receive calls, and that added to the stress.  Today’s mask was Resignation.

You know, if things were improving each day, or even each week, I could stand it. A simple callback from the VA?  It should not be too much to ask.  As caregivers, we give up everything.  We have serious financial strains, no medical care for me or our family, I gave up my full-time job, and our children see too much and are forced to understand behavior that is erratic and harmful.  Who do I fail?  Myself?  My children?  My husband?  Did you know that the life expectancy for a caregiver is shorter than someone who isn’t?  My mask right now is Exhaustion.

Rolling the stone away was so painful in my mind on Sunday.

Today my mask is Blank.  I cannot leave the cave.

I am Caregiver, Hear Me ROAR!

I am Caregiver, Hear me ROAR! I have come to the conclusion that I need to adopt a fight song!  Something that will keep me charging on, as my batteries wear down while performing my Caregiver duties here at Walter Reed Army Medical Center, Washington, DC.

What brought me to this conclusion was a comment made to me today, as I stood positioned next to my injured soldier as she worked out at the Walter Reed Military Army Advanced Training Center (MAT-C). For those of you not familiar, MAT-C is the center of activity for our Wounded Warriors who have broken or lost limbs and also suffered traumatic brain injuries (TBI).

For the past nine months, I have accompanied my daughter; a soldier injured in Afghanistan, to appointments for her multiple injuries. Accompanied is not the best word to describe what I have done as a Caregiver, that is a subject for another time.

A gentleman came up to me and told me how great my daughter looked and that her recovery was remarkable. He said, “This place [MAT-C] does amazing things.” I looked back at him stunned, as I was performing my Caregiver duties…catching my daughter as she proceeded to fall off the exercise machine. 

Tired and desperately needing a break from the stress of Caregiving, I said to him firmly and loudly, “It’s because of me, my hard work and being her Caregiver, that is why she is progressing as well as she is.” He was taken back by my immediate response, as was I. Oh well, I was just having a bad day…tired, exhausted and obviously not wearing my Army Mom hat which is a clue to avoid me at all costs.

My point is…I’m tired of being INVISIBLE and not getting the credit - really, recognition - for helping in her recovery. I have been by her side 24/7 for nine months. She would not have made it to any appointments without my help. And her recovery? Well because her Caregiver believes in holistic approaches that are not part of her treatment plan, she is now progressing very well. By the way, there is no comprehensive treatment plan—I am still awaiting one.

So now when I start to get tired or feel that my work is INVISIBLE, I have adopted a tune that plays over and over in my head. Thanks to Helen Reddy and Ray Burton for the inspiration from I Am Woman.  Insert Caregiver for Woman in the song, and you'll see what I mean. Maybe you would like to think about adopting the song as well, or perhaps we create one on our own. Whatever works to make it through the day, right?  Let me know your thoughts!

Caregiving Reality: Living with PTSD & Spreading the Word

Hello friends,

It’s raining here in the DC area today, and my thoughts keep circling to the conversations and events of this week -- round and round and round.  I finally decided that the most important thing I learned this week is that in addition to Caregivers often being invisible, is that the general public simply does not understand what it means to live with someone with PTSD.  (TBI brings its own set off issues that will be the subject of another blog posting.)

Do any of the following sound familiar to you:

-      With little warning or perhaps a small trigger, suddenly the person who is your adult son/daughter or spouse begins yelling at you, blaming you for every wrong thing in their lives; your heart cracks while your head tells you to be patient and kind.  It’s the condition, not you.

-      In a moment, suddenly you, the caregiver, is the enemy:  you neglected to do something, you didn’t do it right, your attention to them wavered for 23 seconds and now you clearly don’t care, the callbacks from VA or the local non-profit wasn’t returned, so you must not have asked them for help correctly. That crack in your heart widens, and your head begins to wrestle with the unfairness of the verbal attack, or punishing silence.

-      You are seeking help, online or on the phone.  The questions come pelting at you:  “Who are you talking to?  Why are you on Facebook, are you having an affair?  Tell those @#%$% that we need the help they promised!  Give me the phone – I’ll tell them what it’s really like! Are you really on Hold, or are you waiting for me to leave the room?  Get off the phone/computer, I don’t know why you’re wasting your time and mine – they don’t care! I don’t like when you talk about me to others….”.  Additional cracks appear on your heart, and now your head is stuck trying to analyze the data.  Reach out desperately for help, or stop reaching because it makes the day/night so much worse in the short run?

-      If you have children, when the yelling began, so did the stomping around, and the demeanor of your husband or adult child changed to someone you nor they know.  Your children begin crying, cringing, hiding, and the fear in their eyes takes over. Each time this occurs, the children retreat and cope in their own way. Your heart cracks even more, and your head says “How much longer can I do this?”

-      Your household might be filled with dark, angry music, the sounds of video war games, the clink of beer bottles, the whoosh of flame to light a cigarette, or the rattle of medication in a plastic bottle.  The blinds may be drawn on the windows all day, every day, or there might be a specific routine that MUST be followed, or there’s hell to pay.  Your heart is sore, and your head aches with trying to find solutions to avoiding scenes like these or living this way.

-      And, finally, unless you are able to see progress through counseling, medication, treatment plans, support and respite, and also have a support group to lean on (online, in person, or on the phone), your world has become smaller, your cracked heart has withered, and your exhaustion is near total.  You must take care of yourselves, your children, and your vet.

Helpless must not devolve into hopeless.  YOU MATTER!

Unfortunately, all those stories are real, and this list is only the tip of the iceberg.  I DO want to also emphasize that many vets are receiving help for their PTSD, and some Caregivers too.  Secondary PTSD is real.  PTSD does not have to mean a lifetime of living with a cracked, sore heart and impossible choices to go or stay.  The really hard part is to persist in gaining help, surrounding yourself with whatever support works for you, and knowing that people help more when they understand. 

So, in whatever way is possible for you, perhaps we can work together to help the rest of the world to understand.  Many of you have told me that your own family does not understand the invisible PTSD behaviors that can undo a family celebration.  If your own family is baffled, what can we do?  Well, let’s see if together we can create greater awareness, share a single day in your life by writing it down (yes, I know, there’s no spare time), or recording it on your phone when a thought comes to you.  The Caregiving Reality of PTSD needs to be shared and openly discussed.  Eyes and hearts will open, but it may take time.  We will launch a new initiative to help this in the next two weeks.

The invisible injuries are so very, very hard to live with and the general public would be better equipped to support you if the word got out more.  Unfortunately, the stories that make the papers the most are about the suicides from dealing with PTSD.  We need to prevent that outcome with every tool we have!  If so few are fighting our wars for our freedom, then it’s going to take a village to help them and their families when they return.

I was speaking to a faith-based group recently to spread awareness of Caregivers’ experiences in living with a vet with PTSD and to seek volunteers.  At one point, someone stopped me and said:  “That’s not true what you’re saying.  The government takes care of our troops, and they are getting care”.  …  They did not want to believe the very real stories I was telling them.  However, when the discussion really began and I could relate additional stories and real solutions, the group was greatly transformed.  The point was made to become involved, to be aware, and to proactively reach out to veterans’ families.  And, since my goal was to give them an idea of a Day in the Life of a Caregiver, there is now renewed awareness to assist families in this one community.  It’s a small start.

I’d mentioned that I was at Mologne House at Walter Reed on Tuesday.  In addition to being with some extraordinary Caregivers I know, there was also a special visitor that day.  Gary Sinise was in Washington for several events, but took the better part of that day to visit not only with veterans and families at Walter Reed Hospital, but also at Mologne House.  And, of the line calmly waiting in queue to meet Gary, I’m so glad to say that the Caregivers mattered!  Gary gave each of the Caregivers words of encouragement after he’d heard a small synopsis of who they were caring for every day.  It was a glimmer into how much better things would be for our service families if everyone cared this much. 

Most of us are not celebrities able to bring your days of caregiving to the public, but please know that we are working very hard to change your days of isolation, to help you find the path to the best treatment options in your local area, and to every day make Caregivers less invisible.  No matter if you’re caregiving for PTSD, TBI, Alzheimer’s, amputation, disease, or illness – together we will spread the word.

Caregivers are the heartbeat of the family, and the strongest, most remarkable people I know.  Please keep the faith, and let’s spread awareness as best we can, each and every day.  You matter, and you are not invisible here!

Wishing only good things ahead for you,

Linda